I'm going in for my 8 week followup appointment tomorrow. I'm guessing that my PFT's are in the low 60's% range, which feel like what my new baseline is(up from low 50's% pre-study drug). 2 weeks ago I did 1 week of oral Cipro, it feels like it did the trick and now feels like my PFT's went back up and my energy level has aswel.
This was the first October in I cant remember how long that I haven't had to get hospitalized or get IV's. It has been a nice change. With the weather cooling down and people starting up there fire places I have had a bit more chest tightness and wheezing. As much as the study drugs have changed how my lungs/sinuses are working I still have to do all of my nebs (7%HTS, Tobi) and exercise as much as possible to keep my lungs clear and working as good as possible. The drugs gave me a big bump in my PFT's, but I still cough(it is more productive, and easier to get stuff out) still do all of my nebs, still have to exercise and rest. I still have CF, but feel like I have a few extra years and will be able to do a bit more with them. Time to go to work.
2 comments:
Very good blog Colin. You have a great deal of stamina in keeping this up. It sounds like Kalydeco is helping you a lot and I am very happy to hear that. My situation is that of having very severe asthma and my lung function FEV1 going to 47% and it was falling. My wonderful allergist and asthma physician found a new monoclonal antibody named Xolair which moved me from 47% to about 72% over the period of a year of so. I have maintained that over the following 7 years and feel so much better. I think what writing will do is to help you document your case and know it much better. If you're like me, you know it better than your docs. With that you'll be able to get prior authorizations done more effectively. I hope you continue to tell your story and get the word out. Many more patients need to know how much Kalydeco helps people live a more mormal life.
Very good blog Colin. You have a great deal of stamina in keeping this up. It sounds like Kalydeco is helping you a lot and I am very happy to hear that. My situation is that of having very severe asthma and my lung function FEV1 going to 47% and it was falling. My wonderful allergist and asthma physician found a new monoclonal antibody named Xolair which moved me from 47% to about 72% over the period of a year of so. I have maintained that over the following 7 years and feel so much better. I think what writing will do is to help you document your case and know it much better. If you're like me, you know it better than your docs. With that you'll be able to get prior authorizations done more effectively. I hope you continue to tell your story and get the word out. Many more patients need to know how much Kalydeco helps people live a more mormal life.
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